Though aggression is not typical of everyone with autism, new research suggests that it affects many with the developmental disorder and brings significant and often lifelong challenges.
In a study out of Canada, researchers followed 15 families of male children and young adults with varying levels of autism. Of the study participants, nine families said that aggression is an issue they face.
In-depth interviews were conducted with caregivers in the families that cited aggression. Researchers also conducted home visits with eight of the families, but the ninth declined indicating that they were “pretty embarrassed” about their “damaged house.”
Overall, researchers found that families dealing with aggressive behavior struggled with social isolation, concerns about the safety of people and property, lack of respite care and limited professional supports as well as the added expense of repairs and home modifications. What’s more, the families were concerned about being able to find alternate housing for their child with autism as they aged, according to the study published online this month in the journal Focus on Autism and Other Developmental Disabilities.
Though the study was small, researchers behind the report emphasized that little has been done to understand the daily experiences of families coping with autism and aggression. Their findings suggest that there’s far too little support for individuals with aggressive tendencies and those affected by them.
Parents described an “unbearable” level of exhaustion, with at least one mother comparing her situation to being in “jail for life.”
While generally speaking families were happy with the care their child received for core symptoms of autism, most said professionals offered only limited knowledge and assistance for dealing with aggression either through medication or behavior supports. One family was actually kicked out of a home-based program for individuals with autism because of the boy’s aggression, with officials concluding that the environment was not “safe or productive.”
The study authors from the University of Alberta and the University of Calgary said they hope that the findings will offer insight into the type of resources families need.
“It is important to note that there were many similarities in families’ experiences despite much diversity in child and family characteristics, such as child age and type of aggressive behavior,” the researchers wrote. “From the perspective of the participants, there appears to be an urgent need for multidisciplinary professional services that adequately addresses aggression in individuals with ASD across the life span.”
In my experience, autistic folks don’t act aggressively without some reason. Obviously, receiving aggression isn’t fun–try “scary” or “stressful”, so I can understand that parents or other targets may find my processing it flippant.
That said, working out why the kids are being aggressive is a necessary step to stopping the aggression. Paywall at the link, though, so not enough detail available to tell much.
Although, the previous poster found “not enough detail available to tell much,” he/she still posted by his/her own admission a “flippant” response.
Almost any stimulus can be a “reason” for aggressive tendencies. It only has to be stimulus enough for the aggressive individual.
Unless you personally are a parent of a child with a disability, don’t be so quick to dismiss the needs of the caregiver. After all, they are the ones who will often be caring for the individual with a disability for a lifetime.
My son was very aggressive when he was on psych meds. I had to ween him off. He is doing much better
Duh! When you treat someone as if they do not matter, that treatment will manifest itself in some form of aggression towards others. The question is: In what form? Bullying, Teasing, Hazing, and other forms of exclusion for exclusion’s sake should be made part of the discussion.
This is a very ignored aspect of a family living with autism. If the individual is fortunate enough to have a day program and some respite that allows the parents to work, the rest of the time at home is a drain mentally and physically. Even finding the time to shop and prepare meals is difficult, not to mention trying to keep a normal household. The “jail for life” is a good description of how homes have become mini-institutions for all of the members of the household. All of these problems become worst, once child becomes an adult and progress with skills stagnant because of the absence of proper adult programs.
My son is now 23 and has learned to not physically aggress due to police involvement.
He instead now refuses to do minimum chores or speak in a respectful manner. It does seem like “jail for life” for me, especially since his father left the home. My son has a high verbal IQ and resents his limitations that prevent his being praised by society as a genius. He cannot keep a job and increasingly sees society as being unjust to him. The injustice that people with Asperger’s Disorder feel and retain is multiplied by their rigidity. Although I have a master’s degree and ABA certificate, I am challenged to keep equilibrium in our home. I am glad to see other researchers acknowledging this problem and hopefully leading to further call for help for ASD families.
Yeah KA101. Flippant.
My daughter acted aggressive because she wanted it to be Halloween and us to go to the Community center and play on the inflatable jumper there. It’s January. The center is closed. Its 10pm. I had visuals there immediately showing her that we go go to another place with a jumper tomorrow. I had a calendar to let her know that Halloween will come again and we will all go back to the community center. It didn’t matter.
She began to bang her head on the floor and attack members of the family. She’s 10 and strong but I held her head so she couldn’t bang it and she calmed down after awhile. So I am a parent who is deficient in time travel skills but I do the best I can. Ya know it’s not so much that I gave up pretty much every thing I do….it’s not so much that I can’t watch the football game with my buddies…it’s that my daughter whom I love dearly has to be in so much emotional pain. Because it aint Halloween in January.
So yeah..flippant.
Because communication is one of the tenets of autism, is understandable that behavior issues would be present. Many times we think of communication only as being verbal, but it is so much more. Consider the frustration you may feel if you were dropped into a foreign country and didn’t understand the language (verbal and nonverbal) or customs and then had an urgent need (such as using the restroom). Could a possible meltdown ensue? It is so important to look at the world through the eyes of the individual with autism and attempt to understand their perspective.
My family is in its eighth year of dealing with my son’s aggressive behavior. In our case it has been like having a temperamental toddler for 8+ years. It can be scary at times, but we’ve had lots of help and are seeing improvements. I’m very hopeful for his future, though I know we still have some challenging years ahead of us.
It’s so easy for researchers to work with things that can be easily measured, like verbal skills; or observed in a sterile environment, like executive functioning or tics; or reported in interviews, like perseverating or compulsions; but the only real way to “research” the agression is to put hidden cameras in our homes. Anything, and I mean ANYTHING, can set off a meltdown that can very quickly turn agressive. We parents do our best to decipher what set it off and what we need to do to make our children feel safe and able to cope with what that situation is. The inability to instinctively know what to do for my son in these circumstances has created a heart wrenching grief in my soul, dragging me to the depths of dispair. A dispair that I cannot expose even a sliver of which to my 11 yo Aspie son, who is already so low in esteem that he wants to die; my NT 6 yo, who hasn’t lived an NT day in his life; or my semi-Aspie (if there is such a thing) husband, who believes that I should not even be feeling these emotions (can we say “lack of empathy?”). My therapist just keeps nodding her head at me and giving me assignments like “take time to read a book” or “go for a walk” or “go to the spa.” HA! Like that would be any part of my life in this century. Need more families to study? Just visit your local therapy group on social skills group night. Every mom in the waiting room will be banging down your door to join the study if it means someone might offer them some outlet for the intense pain that has taken residence deep in their hearts and dragged every ounce of wellbeing out of them, seemingly for life. Sorry to be such a downer, but it’s true. It’s my life.
My 15 year old daughter with Asperger’s and High IQ has attacked me while I was driving, collected piosonous plants and put them in food to poison her dad, broken a door trying to get to her younger brother to “kill him” and the usual hitting, kicking, threatening to kill us all daily or more for almost 2 years. Finally we had to get her placed out of state in a psychiatric placement. No where in my state would take her! We lived with so much violence and fear for our safety, it was unreal! We are trying to heal and she hopefully is getting some help. We had to threaten giving up parental rights to get our autistic child help and our family as well.
Human beings are born with aggressive tendencies. When a baby is frustrated, not getting what it wants, it will cry and become fussy. As the child becomes older it will hit other or throw things when they become frustrated.. All children will do this. They learn, as they grow, how to deal with those feelings. They learn what is acceptable and what isn’t, in terms of their behavior. With my son, who is a 30 year old man with autism, when he was a child he would tantrum for hours on end. He has torn doors off of cabinets. Torn off a mirror off of a truck ( a Ford 250 ) Thrown things, attempted to leave a car going down the freeway at 65 miles an hour. He has also kicked a male principle where men do not like being kicked ( this was when he was having a melt down and the principle was trying to calm him down.) We used Positive Parenting approaches, Operant Conditioning, Consequential behaviors and used replacement behaviors. We also used blood pressure medication. ( the idea being that when he becomes upset the sensation of becoming physically upset escalates his being upset.). At 30 years old, when he becomes upset he will take a shower, which helps him calm down, Take the dog for a walk around the block, which also calms him down,. When he is really upset he will take part of the blood pressure medication. ( he rarely uses medications at this point but it is available to him if he thinks he needs it.) This has put him in control of his behaviors. When ever someone feels in control of his/her behaviors it increases their self-esteem. They can control themselves. If a parent can work with their child at an early age it would be easier. When the child becomes six seven or eight years old, they develop a pattern of behaviors, when they become upset, that first has to be redirected or extinguished and another set of behaviors instilled. When my son was first diagnosed with autism they different forms of therapy, RDI, Pivitol Response, were not available. Descreite Trial was available but not offered. I read a lot of parenting books, dug into my memory banks for operant conditioning, and also read more about it and created my way of working with him.
I have a very violent child autistic 15 yr old boy just had a meeting with the county I live in and all they said at the end of the meeting was you need to have a doctor make a recomd. for anything to be done I guess my daughter has to actually end up in the hospital for someone to wake up and do something or better yet shoot someone:( these kids are gonna walk the streets someday …if he hurts somebody blame Lehigh County in pa cause they did nothing except fall thru the cracks he is to old for bhrs and family based didnt work three times…and rtfs did nothing except get him stiches in his head and him being sexualy assaulted as well thank you to the great mental health system
I am autistic and know other autistics, and I have never seen such behavior as people describe here. It makes me wonder what is really going on.
Everything in this article rings so true to me. Because I have lived it. With my daughter. Currently I find that most of these studies are done with a focus on males. I understand that these studies need a specific focus however there needs to be more research done with autism as a whole.
From my personal perspective I believe that there needs to be more emphasis on the family as a whole coping with autism. If you treat the family, you treat the child. However the system is currently not set up to focus on the family as a whole but rather the child individually. This leave little or non room for re-integration of the child into the family should the family wish this to be the end goal. And can exacerbate the cycle of these individuals being ‘warehoused’ in unsuitable accommodations.
With little focus on what happens when the autistic individual ‘ages out’ families face a perceptual ticking time bomb of what to do next. This further reinforces the isolation, the unbearable level of exhaustion, and parenting becoming, as one mother so wisely indicated the feeling of being in “jail for life.” As a mom of an autistic teen I find that I often am not able to voice my true fears and feelings of managing an aggressive person over a extended period of time.
I want to thank the parents that responded here. It was an eye opener even for me. I am a sibling, was a caregiver and now a Special Ed teacher trying to pay forward all my brother received. But, nowhere in our lives, did we experience the pain that you have written about. More attention should be given to the whole family as they are all part of this incredible journey. Good Luck and my prayers are with you all!
And, for those that speak without experiencing, empathy and patience is required!
I read this article with a heavy heart. First, because I am living it. I have a child who can be aggressive, and he has done a great deal of damage to our home. Second, my heart is heavy, because no one mentions that these kids might be in pain. Individuals with autism have many chronic medical conditions that often go undiagnosed and, therefore, untreated. Many of these conditions cause pain. My son is only aggressive when he’s in pain. We have found in the last several years that he has inflammatory bowel disease, GERD, interstitial cystitis, and migraines. When we address the pain, he goes back to the happy, sweet affectionate kid we know and love. Autism is medical; these kids are sick. When will the mainstream start recognizing this fact and change their approach to their treatment? Heartbreaking.
Our son was the same way as a child and again during a regression period during puberty. All stemmed from frustration to not be able to communicate that pain and actual physiological changes. It is difficult to experience and especially when the answer most times is medication to mask those medical symptoms. Thank God we chose the biomed route.
In my own personal experiences. I have two ASD kids. My oldest is loving boy but the moment he becomes very aggressive. He IS IN PAIN. YES i get whacked. Hit, Spit. And maybe I wont sleep for who knows how long. He is very High Functioning. The reason. why is act out and has serious pain is due infections and inflammations some where is his body. He act that way due his PAIN and doesn’t know how to react. Once we treat the underlying medical condition. He is back to his lovable self. He started like this at the age of 2. No MATTER what study is done. IF you havent lived a life like this you will never understand the family going thru this. It break my heart. When this happens. My other son doesn’t become aggressive. THE MEDICAL COMMUNITY NEEDS TO UNDERSTAND THAT AUTISM NOT A MENTAL THING IT EFFECT THE WHOLE BODY.
When a child is young temper tantrums or odd behaviors are sometimes excused. When a child grows to an age when the behaviors are no longer acceptable even to the parent, what do you do? You shut yourself off from society. “Social Isolation,” Well, depends on the day. The aggression in an autistic person is at times understandable but still very difficult to live with.
I started my own private homeschool recently for my autistic teen daughter and I am trying to teach what had not been taught in school. Often Educators and at times society encourages, or applauds what we are able to do and ignores our challenges or areas of weakness. If you pretend there is no problem, then there is nothing to fix. Educational frustrations I feel contribute to the majority of HFA teens acting out, and then there are the environmental challenges in school which help create their world of depression.
This is something that goes undiscussed much too often. Families dealing with autism need a great deal of support. There was a time when students with these issues were warehoused in public health facilities and drugged into insensibility. This has changed for the better, but there needs to be a happy medium so that families and school communities are equipped with the resources needed to successfully deal with aggressive behaviors and self-destructive behaviors.
I’ve found parents typically don’t want to be told that they may–possibly–benefit from taking a different perspective in the face of $PARENTING_CHALLENGE. They complain that I’m being “flippant”.
Hence my attempt to acknowledge that frustration. I know it’s not fun to have a kid whose method of communication involves inflicting pain.
Problem is, I’m not seeing much about what alternative means of communication is readily available to these pain-inflicting communicators. Do they routinely use spoken language but resort to pain when in stressful situations? Do caregivers ignore non-pain attempts at communication, such as pictures, writing, other devices, or difficult-to-understand speech, for some reason?
My experience with autistic people is that we’re generally aware of the fact that others have feelings & emotions. We are generally pretty sensitive to those around us, and don’t like having them suffer. We prefer a pain-free household too. Chances are that these folks weren’t born wanting to inflict pain on their parents. Rather, they learned that doing so is, unfortunately, the best way they know to get their needs met.
And what I’m seeing here is a lot of parents attacking that difficulty from the perspective of making pain-infliction carry increased negative consequences. That’s the Non-Flippant, Glen S-Approved Way.
Or one could make other communication methods more useful. Flippant or not, it worked for a parent I know–she actually won an award from the Commonwealth of Pennsylvania for her ISP drafting, which, among other things, got a Deaf guy to stop aggressing.
(Despite what the aggression-complaining caregivers claimed, he was/is quite intelligent and knew enough ASL to communicate. Once ASL-capable people were brought in, and thus people started paying attention to his signing, he stopped aggressing.)
Presuming intelligence and working to find a communication channel aren’t easy thing to do when one’s being hit. I realize that. But they’re a far better solution than just escalating the force used.
KA101 presumes incorrectly that having momentary exposure to another’s child is the same as raising that child. The poster is not in the home with the child or in school with the child, doesn’t have to deal with school schedule changes, the changes that are caused when school is not in session, over stimulation brought on by a trip the the grocery store.
The point at hand is not whether the child and aware of another’s feelings. The point is the aggressive tendencies themselves that (unlike posted earlier) are often brought on by life in society.
Unless you are a parent, you have no idea what parents experience throughout the day. You have no idea the actual emotional strain of the fabric of the family.
Yes, the above comment from this poster are flippant.
People do not like to talk about this. When there is aggression, doctors want to prescribed drugs to
minimize the behavior. Therapy is better, and social activities.
We’ve been dealing with this issue for over 15 years as the parents of 2 severely autistic boys, ages 22 and 15. My older son, who is nonverbal and low-functioning, had severe behavior problems when he hit puberty. He got kicked out of high school, wasn’t educated when in school, and finally received an education at age 16 when we were finally able to get ABA services for social skills help for him. My younger son has been aggressive most of his life. He hits, kicks, bites, spits, destroys the house. He’s also bigger than I am so it’s become more difficult to deal with him. I agree with the parents who spoke about their children being in pain. My son has a lot of health problems, GERD, severe allergies, etc. so I also feel many of his issues are because he is in pain (which he cannot localize, so it’s hard to treat). While we deal with his health issues, his aggression escalates. The “jail for life” idea is so on target, we describe our house as a prison. Everything is locked because he escapes, he has pica which makes the Gerd and thus the pain, worse. But the attacks continue daily and are often unpredictable. I fear so much for his future, it’s a very sad situation.
As a parent of a 52 year old female diagnosed at 7 months with DD and Autism (she did not talk at all until she was 7 years old). She was hyperactive-constant motion, even during the night. Very little appetite, she
did not like to be held or touched, would not acknowledge or look at a mirror, a Christmas tree, etc. And, for 20 years she had grand mal seizures. I have tried so many ways to control all of the above issues-some very successfully- that I would be glad to pass on what worked! Even today, there are some behavior
problems – but there are many good things in her life. She has her own apartment with 24/7 Caregivers,
has many trophies for bowling (some games over 200) and at Special Olympic swiming, Volunteered 5 years in the office of Visiting Nurse, sews, water-skied, crochets, and is going on a Cruise this year. But also she had a meltdown last week at the grocery store checkout line. Life goes on – but I have learned enough of my own coping skills to calm her down enough to get her back to the car and house. “You have to walk in someone’s shoes” before passing judgement. Does any one read these emails and respond? Thanks, clw
The trouble is that psychiatrists then recommend powerful and very toxic psychiatric medications such as risperdal. Most people do not know just how toxic these drugs are. Antipsychotics, for example, have been found to shrink the brains of monkeys and rats, and one study of psychiatric patients found loss of brain volume over time was correlated with dose and duration of antipsychotic exposure. Massive weight gain and breast development in males has also occured. Usually psych meds are pushed on autistics because of meltdowns but sometimes for harmless repetitive behaviors as well.
My son became extremely aggressive at the age of 16. He would suddenly, and without any antecedent that we could recognize, attack family members (biting, hitting, slapping, hair pulling, etc). He would then hit himself (so hard that he has broken his eardrum and lost hair). I also felt like I was “in jail for life”. I received no support from any agencies or doctors. I was put off by professionals and made to wait months for an appointment with a psychiatrist who thought Prozac was the answer. It saddens me to see, that even today, so many people still are quick to blame the parents for this behavior. This type of behavior can destroy families. We must support each other. If you have not experienced this in your life consider yourself lucky and have some empathy for those of us who live with this nightmare everyday!
OWhen you a son who is nonverbal, how doyou know what is causing the aggressive behavior. He is happy one minute then the next he is freaking out. It is so sad. We need help! Sometimes Ihave terribthoughts. I’m to embarrassed to mention. My son is twelve and Icant imagine spending the rest of my life like this.
Every administrator, educator and physician who works with people should read these stories. No one who doesn’t have someone with autism can really understand what it is like to like to live with a subset of people who suffer from “violent” autism. Needs are not being met and that only makes things worse. I like the “being dropped into a foreign country” comparison. Because the words autism and violence linked together are such a taboo (everyone including CNN’s Dr. Sanjay Gupta) refuse to even consider it so nothing is studied and even less is done. I am now the care giver of an extremely bright 48 YO who does quite well with my care but who just can’t live in a society that refuses to provide the supports someone with full autism, severe specific learning disabilities and we recently learned a TBI which I wonder if was caused by serious head banging he started the 15 years that he was living on his own 2000 miles from me. He has a 4 year college degree but no hope, no help, no job and no support and I have a life sentence.
What, if any, are the researchers/professionals recommending to counter the aggessive behavior? I would like suggestions and/or input if possible.
I can totally relate to all of you parents here…and yes C.L.W. – I read your post and feel for you. I have an 8 year old who isn’t diagnosed as “autistic” but as “developmentally delayed”. He is non verbal and also has severe physical disabilities. We work hard to keep him happy, but it is a daily struggle. He is happy most of the time but will have violent outbursts – kicking, pulling hair and pinching any of us (including our dog) if we are too close. On the one hand I totally understand that he is frustrated and this is just one of his only mechanisms to show his frustrations. On the other hand, it is so difficult and I think that some people who are making judgmental comments here should spend just a week in our shoes. I can be cuddling and playing with my child and he will suddenly (out of the blue) pinch me so hard to draw blood – I have tiny scabs all over my hands and arms. KA101 – you are not just flippant, you are insulting and clueless on this topic. I love my little boy and will continue to do whatever I can to help him learn and grow. But there is not enough support for families with children who get violent.
Im a single mom w a 12y.o. autistic boy my life isnt just prison…its hell. i thought it was just florida that sucked for services…really really depressing to think its like this worldwide.
Aspie mom 67
Im right there with you..i have 16 y.o aspie
14 Y.O NT…who hasnt known an NT day either and
12 y.oautistic boy whos aggressions have no discer.ible triggers..i.e.
He can wake from a ling restful sleep and pummel nearest thing…me
i pour nothing but live into this kid and he beats me???? Senzeless…sign me up for
those cameras…so someone can tell me im not nuts…there is no trigger
This article is accurate in it’s description of families living with aggression and violence from their autistic child. Not all children with autism are aggressive, not all aggressive episodes are regular or continual. However, there is an inadequate amoutn of supports for families that truly need them. Many doctors suugest calling the police when there is an episode, however, appropriate placement often can make the emergency room the last stop before home again. Medications vary and are often grossly inadequate at controlling tantrums, or even lessening them. There is a need that is not being met for parents and families who face this on a regular basis. There is also a lack of understanding among the psychiatric community, as many hospitals or practices even, will not accept a patient with low functional levels, low IQ’s or behavior problems.
KA101,
I don’t feel insulted by your comments at all. I may not agree with your thoughts, but they are your thoughts.
My personal experience involves being choked at 5 a.m. while I’m making coffee, no warning, he just got out of bed, walked into the kitchen and put his hands around my throat with a death grip. We have 15 years of this type of behavior, yes some can be explained and we do our best to work arround things we know will cause his stress.
With that said, not every episode lately has had a warning, a precursor if you will. He can simply walk into whatever room I’m in and attack violently. He’s had all of his usual requests met. He can and does ask for things, it’s not his way of communicating anything other than at that particular moment he wants me dead. We have a fairly well structured environment which he has steadily regressed from since puberty, although the “experts” tell us we are doing it correctly.
My son is a 2 year old masquarading in an 18 year olds body. He has the IQ of 65, even though I’m sure that’s inaccurate, he has never tested well even when he knew the answers.
Quite frankly, I’m exhausted. I would enjoy not being on pins and needles, not being afraid he’s going to grab the steering whell on the Interstate, not try to jump out of the car, not put me back in the emergency room. I would, honestly enjoy that. No, I don’t want him to leave home, I want him to find peace so we all can find peace. This may or may not happen but it doesn’t mean there is something wrong happening in my home. My son does not have conversations but he can talk in full snetences, read, write, use a computer, play music, draw, etc. It isn’t that he’s lacking the same luxuries as the rest of those in the house, he has equal access to everything. Nothing is behind lock and key other than soda because he will drink it all in one day, but he can have it if he asks.
I do resent the idea that there has to be something going on for a child to be aggressive or violent. I cannot control the world, I don’t wish to control my son, I do wish for peace. Please, do not speak about “every” scenario” as a whole when you haven’t lived every scenario, and I won’t assume that you or anyone else, can’t see past the front gate.